“Benzodiazepines help some people.” This common response to our message of patient harm prevention echoes throughout our online platforms. In some ways, who can blame these commenters? The opioid epidemic, to which the media frequently and errantly compares benzodiazepines, was a disaster for chronic pain patients. Forced withdrawal from benzodiazepines is both common and inhumane. At first glance, our message, without consideration and context, may seem threatening. The truth is we at Benzodiazepine Information Coalition (BIC) are advocating for all patients, including those having success on benzos. Perhaps I can provide some clarification.
To begin, don’t worry — we know benzos help some people. We aren’t arguing that they don’t. We seek to improve patient safety. BIC’s mission is not to ban or restrict benzodiazepines. As long as patients are receiving accurate informed consent, we do not seek to control anyone’s personal medical decisions. Just the opposite — we use our platform to fight for patients who wish to remain on benzodiazepines should anyone attempt to force them off.
BIC’s mission is not to ban or restrict benzodiazepines. As long as patients are receiving accurate informed consent, we do not seek to control anyone’s personal medical decisions.
We are aware that benzodiazepines can be quite useful intermittently and in the short-term (weeks) and acknowledge that there is a small percentage of patients for whom long-term use, with fully informed consent of all risks, may prove beneficial. We also know that a minority of patients, for reasons completely unknown, experience zero problems on the medication long term and have no trouble stopping them no matter what discontinuation method is used. None of this is news to us.
Patient Safety Matters
Some patients reporting success on a medication doesn’t mean that the failures can be dismissed. What we’ve found is that medical providers are often inadequately trained regarding benzodiazepines. Doctors are prescribing and deprescribing benzodiazepines without having full knowledge of the consequences; impeding their patients from providing fully informed consent.
These medications carry, amongst other problems, a risk of a dangerous and lengthy withdrawal syndrome that can continue for months to years beyond cessation. Estimates say that a majority of patients on long-term benzodiazepines will experience some sort of withdrawal, with a significant percentage being severe and long-lasting.
Benzo-created problems are nothing to scoff at. One of the longest, nastiest, and most disabling syndromes in existence is caused by stopping these medications. Even from patients who have experienced other tragedies—like cancer, the death of a child, or war, testimonies flood our inboxes naming this benzodiazepine-created syndrome as the worst experience of their life. There are typically resources available to assist and support people through the most tragic events in their lives, yet meaningful support for victims of prescribed harm remains nonexistent. Instead of receiving compassion and care, suffering is often denied and attacked, patients are blamed and falsely labeled as addicts, or accused of “fear mongering” or “pill shaming.”
Even from patients who have experienced other tragedies—like cancer, the death of a child, or war, testimonies flood our inboxes naming this benzodiazepine-created syndrome as the worst experience of their life.
The patient cost of this prescribed harm epidemic is too high. Beyond serious and dangerous withdrawals, some patients develop neurological damage when stopping which can persist for years after the last dose. Additionally, some patients develop adverse effects on the medication that are misdiagnosed and unrecognized as benzo-related. Tragically, in response, the benzo doses are often increased, creating a never-ending loop of illness.
Many benzo harmed patients, after receiving inadequate or dangerous direction from their prescriber, identify the problem on their own. This has led to the evolution of large online patient communities where benzo harmed people from all walks of life, even medical professionals, exchange information and provide each other with support. Consulting the internet for guidance on benzo harm because answers aren’t available from the medical field is unacceptable, but it is currently the norm.
Everyone Benefits From Accurate Benzo Education
This isn’t an “us versus them” situation, nor should it be pitting the “good outcome” patients against the bad. All outcomes deserve a seat at the table. Many of the “good outcome” patients will become harmed. A lot of us were once considered to be “good outcomes,” blissfully ignorant of the horror ahead. Silencing our efforts to improve patient safety creates harm, even for the patients benzos currently help.
When we are speaking about harm, we are not arguing that anyone should be restricted or removed from their prescription. This is dangerous and can result in disability or even death! We are calling for reliable research and education so medicine can improve its knowledge base around this issue and patients receive better care.
Some people become upset with prescription-related activism of any kind, believing that drawing any attention to the issue will mimic the opioid crisis, where compliant patients are involuntarily detoxed from medications they needed to function. This is exactly what accurate education would prevent! Calls for forced withdrawal, extreme restrictions or total bans occur when prescribers and the media erroneously place all benzo-related issues under the umbrella of addiction. All of our work vocally opposes this approach. In our engagements with media, we aggressively call for a stop to identifying prescribed patients as addicts, to make clear the distinction between drug abuse and prescribed physical dependence, and to cease relaying a false, alarmist, and quite frankly, patient blaming, narrative about benzodiazepines to the public.
Shifting the focus of a discussion about patient harm to an argument about benefit is essentially saying that the lives of harmed patients don’t matter.
Shifting the focus of a discussion about patient harm to an argument about benefit is essentially saying that the lives of harmed patients don’t matter. Part of the medical field’s responsibility is to avoid preventable harm and revise the educational curriculum when more accurate information is presented. Making the risks of medical treatments known before we participate in them and insisting doctors are adequately trained to understand and effectively manage poor outcomes of their prescribing is a public health service. Denying this discussion because “benzos help some people” diverts us from the reality that many patients are abandoned, harmed, and killed by current benzodiazepine practices. Everyone should care about that.
If you are going to discuss the harm to some of stopping Benzodiazepines, than why wouldn’t you discuss or mention the benifits such as the immediate effectiveness which no other medication has, not even one drug in the anti depressant drug class is effective for ANXIETY ? Have you yourself thought of any alternative which is as equally as effective without a gnarly side effect profile? Which by the way feels exactly like panic. It makes absolutely no sense to give someone with anxiety something that increases serotonin or anxiety. You will never change my view but thank you for your info.
I personally know or knew 3 people that were cut off benzos and are now dead!!SEEMS LIKE THE AMA CONSIDERS A DEAD PERSON NO LONGER PROBLEMATIC!!!YOU CAN CURE DIABETES BY DENYING PEOPLE INSULIN!!!I KNOW I MAY DIE YOUNG BUT ALL TRUST IN DOCTORS IS GONE IN MY BOOK!!!CYA IS AMA NEW MOTTO!!!Cover Your assignment!!!!TRUTH IS ,AND MARK MY WORD,PEOPLE WILL B DROPPING FROM TAKING POISON IN FORM OF A NERVE PILL!!!BUT THEY WILL B CALLED OVERDOSING!!!NOT TRUE!!!THEY ARE POISONING PATIENTS BY FORCING THEM TO SEEK OUT MEDS…IS A GENIUS MOVE BY BIG PHARMA,CARTELS AND OUR AMA!!!!I HAVENT PERSONALLY DRANK IN 25YRS BUT IM DOING MY BEST TO START ASAP!!!!I MAY END UP AN ALCOHOLIC OR SEIZURE OR STROKE OUT BUT I WONT NEED 2MGS BENZOS ANY MORE…
“We are aware that benzodiazepines can be quite useful intermittently and in the short-term (weeks) and acknowledge that there are a small percentage of patients for whom long-term use, with fully informed consent of all risks, may prove beneficial. We also know that a minority of patients, for reasons completely unknown, experience zero problems on the medication long term and have no trouble stopping them no matter what discontinuation method is used. None of this is news to us.”
This is not even close to the current company line in primary care health clinics, where new physicians are inheriting patients on long term benzodiazapines, as prescribed by previous physicians in the very same facility. They’ve learned their medical school lessons well, and can recite the anti-benzo speech by heart. They’ve learned that long term users of benzos must stop, even if there is still therapeutic value, but they raise their hands and back away when it comes to the long term support these patients will need in withdrawal. They don’t have the skill, they don’t have the time, they don’t want the responsibility. They feel good about themselves for having done “their part” in curbing “the other epidemic”, and wash their hands as their patient, prescribed for years and still deriving benefit, is plunged into an insane withdrawal and left to manage it on their own. Clearly benzodiazapines cause dependency and have caused harm to many people. But not all. For some of us, the greatest harms to our minds and bodies comes not from continuing treatment with benzos, which has enabled us to live more normal, productive, happy lives but from the process of discontinuing treatment, which has created debilitating physical symptoms that take away our ability to function in society and wear us down enough to cause depression to the point of suicidality at the prospect of what our daily existence has become, and is likely to be for years or even forever. It is important to acknowledge, but currently is very rarely acknowledged, that the real harm to long term benzodiazapine patients is often not as much continuing as it is discontinuing their use.
I was prescribed clonazepam in 2005 by my GP for insomnia that I suffered throughout my life, and which had gotten to the point that it was interfering with my ability to be effective in my profession. I had no idea what benzos were, I trusted my doctor who told me they were safe and effective, and I experienced immediate and significant relief from a problem that had plagued me for a lifetime.
The doctor should have known, and shared with me, the potential problems with long term use. But she didn’t. She renewed prescriptions for 6 months to a year at a time, no questions asked beyond whether I still experienced benefit. I did. Many doctors came and went from my clinic, none of them questioning my clonazepam prescription for many years. There were some diminishing returns years out from the original prescription, but sleep was still better than it had been, which meant I was functioning at a higher level than I had been. Should these drugs have been prescribed to me in the manner they were in the first place? No. But they were. And they were effective. And they were still effective when, years later, yet another new physician in the revolving door of physicians recited to me the horrors of long term benzo use, and the urgent need to discontinue. Even though I felt no harm and was deriving benefit? Yes. I took it to heart. I began a slow taper from 1 mg clonazepam. The most immediate symptom was a return to severe insomnia, yes probably rebound insomnia mixed in there, but most definitely a relapse to the inability to sleep I had experienced all my life, and had been relieved of for so long. The predictable sequence of events ensued. I was sent to a sleep clinic. No breathing or movement disorder, just primary insomnia with sleep anxiety. I was sent to a psychologist for cognitive behavioral therapy for insomnia. Nice guy. Good stuff. It didn’t work. I was encouraged to try a number of meds in hopes of targeting the right receptors: anti-depressants, anti-histamines, gabapentin…there was a long list of toxic meds that did nothing to help me sleep, that made me acutely ill, and that I had the good sense to stop taking before creating another withdrawal situation. Not sleeping nights on end, continuing to taper clonazepam because I was promised it was so bad for me, my mental health began to go downhill from the effects of continued sleep deprivation.
At first when I would finally pass out from exhaustion every few days, my emotional well being was completely restored on the days when I was rested. But as the process continued, I began to sleep even less and I began to experience physical symptoms of tolerance withdrawal on my now halved dose: burning tongue and taste distortion interfered with my ability to eat and drink normally and intense muscular pain have reduced my 6 mile daily runs to a mile of walking if I’m lucky. My relationships have suffered to the point that I often feel too exhausted, sad, anxious, agitated, irritable to expose those I love to my crap. So I isolate myself. Never having been an overly emotional person, I now cry all the time. I can’t work, I can’t play, I can’t move, I can’t socialize, I can’t experience joy, I wonder if I will die before ever emerging from this condition. My quality of life while experiencing something resembling sleep on a continuous dose of clonazepam has been hijacked.
I wish I hadn’t started down this path, with the express help of my doctor, so many years ago. But I did. It’s done. And I was managing. And now I’m not managing anything. I was a person who had trouble sleeping and who was managing this chronic illness with a medicine. Now I am a psychiatric patient who is managing only to inch closer to terminal distress with each new day.
For the ones who haven’t started to take benzos long term, they absolutely should not. For those who have taken benzos and experienced harm from this drug, bless you and may you regain the health they have taken from you. For those of us who experienced continued therapeutic value, and who are experiencing unspeakable harm as the meds leave our bodies, is there a point at which the harm is just too much? I agreed to stop taking clonazepam because I was promised they would lead to trouble in my old age associated with falls, fractures, cognitive impairments, dementia. I get it. After two years of not sleeping, one with a similar affliction could imagine the intense dizziness, clumsiness, lack of alertness, brain fog, and cognitive impairment that results from severe refractory inability to sleep.
Is one worse than the other? Well, I’m in a tough spot aren’t I? If I choose to address the sleep with a benzo, even if I am physically dependant on that benzo, shouldn’t that be a valid option for me? Lack of sleep does to me what many claim that benzos do to them. Can people understand that, given the sequelae of chronic sleep deprivation, using clonazepam could be the least of the two evils here? The benefit sometimes outweighs the harm. I would just like for that to be acknowledged and respected. In the medical community where I receive care, with the exception of one psychiatrist who has seen what this process had done to me, it is not.
I’m going through the same thing you went through right now. I lost my lorazepam, was falsely accused of being a drug addict, harassing, and intimidating which couldn’t be further from the truth. I’m way too empathetic and can’t harm others (not even my ex-husband who abused and tried to kill me because of Xanax, alcohol, and constant pill popping). I was just having withdrawal, and suicidal ideation, crying for help, but apparently that’s offensive to my pharmacist (whose always been mean and dismissive of my whole family since we moved to our new place 8 months ago.) I ended up in the psychiatric hospital for almost 4 days. Was accused of being an addict there because of a false positive test. Begged for retesting, then got a negative test. Hospital Dr was great. She apologized for the accusation. I tried to get admitted to 2 hospitals before I landed at the last choice. That Dr argued with me that I was suicidal because i didn’t have my med any more, so the psych intake wouldn’t admit me. I told her I’m going through withdrawal because i lost it, and was suicidal and having panic attacks years before i got on the med. Apparently, wanting to die and trying other hospitals until i could get in was also drug seeking behavior. My case manager is on my side and believes me. She vouched for me to the medical director at my psych clinic and my current doctor. I told my psychiatrist that i don’t think I’d ever want to get back on it, just because of this fiasco. I’d only seen my new psychiatrist 2 times, so of course she let me know that at least 6 people had said i was a dangerous addict (since the medical director put in the records that I was abusive, etc.) The medical director (who should be stripped of her license to practice) fabricated it all. I’d only spoken to my case manager who stood up for me. So who was I harassing and threatening? Med director claimed the pharmacist called her and said I was being the same was way. When I was trying to ask the pharmacist to call my Drs office, she refused. I know the med director is an absolute liar and have been told that they’ve lost several Drs, case managers and other employees since she took over 6 months ago. She’s done it to another patient as well. Now I’m worried that they won’t even prescribe me pain meds after future surgeries. I’ve been falling apart. I have had 2 shoulder surgeries, and 1 hip surgery. My other shoulder will eventually need to be worked on, and I’m terrified. My life is now ruined because of false accusations that were perpetuated by the initial accusation, and begging for my med because I was so freaked out that my daughter might see me having a break down. Before any of this happened, she’d already had intrusive thoughts, serious anxiety, and ADHD. Now she’s had to witness me talking nonstop for a week after I got back because my anxiety is through the roof and I’m in a manic state. I have serious diarrhea of the mouth that apparently has gotten me into this mess. Now I will never be out. I was prescribed Gabapentin, but it only takes the edge off. It’s nowhere near what the Lorazepam used to do for me when I was doing well for over 10 yrs. Now any doctor I see in the future will be looking for the addiction, so that’s what they will see. It’s confirmation bias. Why would any person be so evil to do such an unthinkable thing when she hadn’t even looked through my med record or even met me? She didn’t offer me a taper or anything. As you said, you can die from the withdrawal. Every doctor I tried to remind that fateful night had scoffed at me. If my Dr hadn’t been out sick when this all happened, I probably wouldn’t be in this shit show now. At least I would’ve been given a taper. Maybe not. So now this is my life and no one will ever believe me again. I can try to complain to every patient advocate at each place, but I’m in no state of mind to keep reliving this nightmare.
This is so sad to read. Benzos should be completely BANNED. They ARE POISON. It is horrifying that even the injured continue to say that Benzos are helpful tools. POISON IS POISON. If it does not destroy you initially it will destroy you down the road. Clearly those that continue to claim that Poison is Medicine have not suffered Akathisia. As for people suffering from chronic pain, many of us are suffering from chronic pain due to drugs only we were never informed that the drugs damage the nervous system and cause chronic pain and we were taught by the doctors to swallow more drugs for the pain that was actually caused by the drugs. This denial has to end once and for all. We have to STOP claiming that POISON is medicine.
This quote should be clarified and corrected.
” Others may have a difficult time finding a doctor who is willing to prescribe Valium or a prescription for a compounded suspension of their current benzodiazepine. Many who have found themselves in this predicament have successfully tapered on their own by making a homemade suspension in water or milk. A pill is either crushed or allowed to disintegrate in, for example, 300 ml’s of liquid. One ml is removed from this suspension and discarded, the rest is ingested. ”
Disintegration is not dissolving. A tablet is disintegrated when it breaks apart. This is usually caused by exposure to moisture.
Dissolving or causing a solution is a very different thing. A solution requires a solute ( here a benzo) and a solvent. A single solvent does not dissolve all benzos as is assumed so often via benzo-help sites.
A suspension is the product of mixing a material with any liquid. The material always will fall to the bottom of the vessel ( precipitate) making it non-homogenous.
If you are measuring a solution, you know how many mgs of benzo are in so many mls of solution. At constant temp and pressure, the benzo liquid will remain homogenous. It is reliable.
If you are using a suspension, your benzo will precipitate with no change in Temp or pressure. This means that a suspension is unreliable for benzo tapering.
While Whole milk is a useful liquid product, it is an emulsion.
One quality of your benzo is solubility. It is listed as mls needed to dissolve a mg of benzo. Some benzos are insoluble in a given liquid.
One Bottom line: Do not mix Clonazepam or Valium in water. You may be able to endure the inaccuracy at high benzo doses, but ultimately this will fail. This mistake peppers internet benzo-help sites. This is how and why “water-titration” is erroneous. That’s the science.
Grammatically, “water titration” means that water and not benzo is titrated. This may seem picky, but it always annoyed me so I vented here.
No matter how you taper using a liquid, always look-up the solubility of your benzo first.
Milk is useful to make a benzo-fat-water emulsion. The product is reliable. However, milk is not a taper method; it is a benzo delivery mode. It has physical features both suspension and solution but is not identical to either of them.
Whole homogenous milk to make a Valium emulsion is the original benzo delivery mode that I used to implement the original BenzoMicroTaper protocol in august of 2005. Later I used a Valium solution but only for convenience. The taper process was the same regardless of the benzo delivery mode.
Accurate measuring is essential, and this becomes clear as your taper progresses.
Getting these concepts correctly is the key to “slow and steady” as opposed to “well sort of”.
give me a break..klon dissolves just fine in my world.
JC,
Expressed very well. Thank you!
Gone through many years of lorazapam, klozopam and now diazapam. Been withdrawing for over a year. Really been tough, physically, emotionally and mentally. The scary part is “will it end”. So glad you publish information on this problem. So little information is known by professionals. You are my best information. Thanks so much.
Only on 2.5mg Valium for 6 weeks prior to spinal surgery, CTd by Dr who denied i had become dependent. Sxs so severe I’ve had 2 strokes, most recent one was 3 months ago from which i lost my sight. No previous health issues whatsoever, never taken a pill of any kind before this.Other docs now having to try and fix this mess that they original prescriber caused. Thank god they are benzo wise, they say I’m the exception but the very reason benzos should never be prescribed outside of the ER as it’s impossible to predict how a patient will react. I’m 2 years off and suicidal from the relentless horrific sxs.
I was just talking to my husband about this, as I have many times before. How am I going to get off of Xanax 2mg BID? I was a healthy 36 year old, who took a position as a nurse manager at a brand new hospital. While I enjoyed many aspects of it, something seemed so wrong. Nursing and business rarely see eye to eye. I became frustrated and took those feelings home. My son’s were only 7 and 14 at the time. I began to have marital problems. Eventually getting divorced. A dr at the hospital thought i needed something to take off the edge and put me on Valium 5 mg prn. He later increased it to 10 mg. He then retired. I saw another physician from our facility. He encouraged me to see a psychiatrist. During my first visit to the psychiatrist he asked if I had ever taken Xanax. No, i had not. And, don’t recall ever hearing much about it. He immediately wrote a prescription for Xanax 2 mg daily, increased to BID by 3rd month, and Ambien 5 mg daily. I saw him monthly for over 10 years! Xanax 2 mg BID and Ambien 15 mg at bedtime. The only complaint I had was that I thought i was having difficulty concentrating at work. The Xanax never made me tired. It did take away the increased heart rate,the tightness in my chest, the overwhelming feelings i had triggered or not. He put me on Vyvanse 40mg daily. Eventually increased to 70 mg. For over 3 years i took this combination and saw him monthly. I am a Registered Nurse and thought that this was how I was wired. That the Vyvanse woke me up. The Xanax kept me sane through the day and Ambien put me to sleep. I asked occasionally when could i get off the xanax. I had heard frightening stories of withdrawal. He told me it would take years and i wasn’t at that point yet. My world began to unravel in 2015 when i assisted in opening up the surgery ward at work. I was on my second divorce. My left shoulder and neck were in extreme pain every day. I cried. I sought out an Orthopedic dr. Was in physical therapy for months. Finally i asked my therapist if i needed surgery. She said she thought i would never ask. I had bone removed from my left shoulder. It was an open procedure, which took a little longer to heal. Finally the pain was gone. Back to work. Continuing the Xanax, Vyvanse and Ambien routine. The surgery room was failing. Vendors weren’t being paid. Surgeon’s weren’t being paid. My neck and shoulder pain was back!! I decided to skip Vyvanse a couple times to see if it correlated with the pain. It did! I told my psychiatrist. He said that it couldn’t be. What??!! When i don’t take Vyvanse my neck and shoulders (now both) don’t ache and burn. When i do, I am in for pain from hell. I couldn’t tolerate the downfall of the operating room. I went to night shift on Med Surge. I also stopped the Vyvanse. I started gaining weight quicker than i could get on the scale the next day. My appetite was not satisfied, my body felt like it was shutting down. I couldn’t take life anymore. I quit nursing. I stayed at home, in bed for almost 16 months. Yes, still on xanax and Ambien. I had no will to live, to be a mother, to be productive or even take shower’s!! My ex co-workers called to tell me they weren’t recieving paychecks. That Medicare auditors came in and the CEO volunteered to close the hospital. Our hospital was involved in a 12 hospital fraud scheme by the owner’s, who came out with 9 million dollars!!?? What!!?? I’m bedridden from detoxing myself off Vyvanse, taking Xanax to cope with each day and Ambien to sleep!!?? What a nightmare. My mom dragged me out of the house to take her to see her dr, who also is a holistic dr. Mom was finished with her appointment that i sat in on and she was excused. The dr held me back at the request of my mom. She told me she knew of my past 10 years of hell. She knew the medication I was on wasn’t helping obviously if i had no will to live. And, asked if she could help first by drawing 12 vials for lab work. My cortisol was off the charts, my adrenal glands shot and my thyroid was barely ticking. Not to mention the multiple vitamin and minerals that i was lacking. She worked with me for 6 months as I slowly started to come back to life. I asked her when could i get off this Xanax and Ambien. She said it would be awhile, but definitely a goal. She nursed me back to better health. I say that because I did choose to go back to work. Now, 100 pounds bigger than when i left the nursing profession. But she gave me hope that my metabolism would return. I completed 2 weeks of in class orientation and it was the first day with the nurses. I rode with my new co-worker to the first home to check. Opened the door to her truck and fell out onto my back. Fractured my back and had 3 major sprains. What??? My health, my back, my shoulders were all getting worse by the day. They asked me to resign on my 60th day. I resumed physical therapy in my hometown and saw the workman’s comp dr for 8 months. During that time I also saw my Orthopedic who thought my shoulder muscles were grating on degenerative joints. I had two shoulder surgeries to clean out the bones. Eventually, 18 months ago, I found another nursing job. My primary dr wanted to run more lab work on me before i started. My adrenals, thyroid and cortisol was out of range. I had the will to work and followed her diet, supplements and continued the Xanax 2mg and Ambien 10 mg. I asked her 6 months ago if i could get off Xanax and Ambien. I now was very clear what these drugs were and what they could do to me. I wanted off of them! She put me on Wellbutrin. Remember, i had never been prescribed an antidepressant. I went through the adjustment period of Wellbutrin and now take 450mg. Last night I was talking to my husband about what if I was in a car wreck or hospitalized for some reason. And, what if i couldn’t tell them i was on the benzodiazepines? What if they skipped a dose, was late with a dose or a nurse took it herself? What would i do? That is where i am today. I turned 50 years old the first of this month. I have been on benzodiazepines since i was 36. I feel my memory slipping a bit. Not as sharp as i once was. My co-workers tease me and laugh it off. When i know that something is going on with my memory. I can’t remember names. I feel dyslexic and dysfunctional at home because i don’t have to “try” so hard in front of my husband. But, I am scared. Scared back into another anxiety. How will I get off of this stuff? How? I have no answers. Then i ran into these articles. I’m in shock. The physical dependence is a real thing. I have tried to get myself tapered off. When my head is bursting, my body sweating, my heart beating out of my chest, my ear drums thumping, I know this will be a long road ahead for me. Can i do it? Can i tolerate the uncomfortable physical and emotional symptoms of detox? I don’t know. I feel I must for my Neurological state. Or, is it too late? I would have never, ever taken those horrible pills had i knew what would happen to me 14 years later. Actually, i did worry about it through the years, but the dr kept prescribing. That is my story. I pray someday to have a healthy ending.
It is so important that JC noted how many of us who have been terribly harmed by benzos were categorized as “good outcomes” early in our treatment. In fact, I think most people who have taken benzos had good outcomes in the beginning. I took Xanax only at bedtime for many years, with no particular problems. Eventually, I started needing the medication during the daytime, and the symptoms of tolerance withdrawal grew worse and worse. It took several years before I realized it was the drug that was causing my symptoms. If a person stays on a benzo indefinitely, surely he or she will eventually become a “bad outcome”.
Yes, benzos help some people… for a while. Then the benzos hit the fan.
I can relate in some way to everyone’s experience with the positives and negatives of Benzos and other prescribed medications. I am fairly new to this horrific problem. I stopped Ativan, Trazadone, Haldol, Seroquel and Adderall all within a week of each other cold turkey. HUGE mistake!!! I did this for several different reasons. The symptoms that I am experiencing are extensive to say the least. This is a tortuous hell that I would not wish on my worst enemy!!! That being said, I am going to say that if you are someone who is trying to navigate through your own experience with these types of medications or any other, the absolute best thing you can do is inform yourself before you swallow anything. There is so much information out there that is good, bad or somewhere in between and finally I had to simply take in to consideration whatever Information that I could personally relate to. In my situation, my best defense is sifting through that information, obtaining quality support and above all else, will power. Unfortunately, some of those things present to be difficult at moments. Honestly, I could go on and on about this topic and my own personal experience but I am going to end by saying that I appreciate all and any person who somehow connected with this topic. Reading thought provoking, intelligent, supportive, considerate personal stories really gets me through some of the toughest times! There are not words to properly express my gratitude. Keep fighting!
Benzodiazepines have a therapeutic action. They have a definite effect on the body over time. Pharmacocodymanics and Pharmacokenetics, amount over time. It is apparent to me that most health care professionals do not understand the science behind Benzos over time and the effects on GABA receptors. Doctors are not always capable of explaining something they don’t completely understand themselves. As those of us who have been directly affected by this class of drugs bring our own valid experience to the table, this information brings cognitive dissonance depending on each individuals perspective and experience. The evidence is overwhelming that many people have been damaged by Benzodiazepines. There are also examples of people receiving benefits who can stop the drugs abruptly with no problems. The ethical and moral challenge I have is that if a patient wants to taper from a drug they chose to take, without sufficient disclosure, they are most of the time forced to find a support group who is promoting a specific taper plan and are left essentially to manage their taper alone. Miss-information abounds. Panic ensues and disasters often occur. We need awareness and accountability at a time when our medical industrial complex essentially has a monopoly when it comes to allopathic medicine in America. I hope the benzo community can unite for the purpose of awareness and accountability. We need to organize and present facts and figures to congress. There will be strength in numbers. I believe we have the numbers. I’m sure there is plenty of blame to go around and anger is very understandable. When the science of how Benzos truly effect the body and mind is clearly articulated, you will find the “smoking gun” associated with this global health crisis.
I am my wife’s caretaker as she continues to suffer from an ill advised ct detox from 20 years of prescribed benzos. We sometimes talk about whether she should have stayed on the drugs but she was beginning to suffer terribly from the chronic illness syndrome created by benzos. Of course at that time we didn’t know it was the drugs. So now here we are, 3 1/2 years post detox, 3 1/2 years lost and the nightmare continues for her as we hope and pray every day that things will get better over time. Until then we will continue to fight the battle together waiting for the day that she will be glad to wake up every morning
Yes, benzos help some people…it did me initially when anxiety had reached unbearable levels.
However, the prescription did not come with warnings and how to stop safely nor with other forms of treatment to address my anxiety.
“ just take this pill and you will be fine “
8 years later, after ingesting 2 mg of Klonopin, just as the doc had ordered, I was worse off.
My life had fallen apart, unable to function properly, an emotional mess.
With no information, I stopped cold turkey and my brain blew up.
I refrain from telling you what happened in the next 5, 6 years ..it will take a book to explain…but in the end, it took 15 years to recover and become a human being again.
At least someone I could live with.
While I have met plenty of people who can take and leave this stuff unharmed, I have also met way to many whose lives were destroyed.
And nobody knows ahead of time in which category you will fall.
A withdrawal from benzos should be done slow and consistent…..with support from those who have walked that road before.
Once done the wrong way, recovery takes years, even decades…
In some cases I fear some symptoms could stay indefinitely.
I know for myself, my nervous system was damaged almost beyond repair and it’s well oiled to raise its ugly head automatically.
I live with it but it’s annoying.
Hi ..I was just reading your post about taking 15 years to recover ..(( hugs)) your a warrior …I am going on just over nine years from cold turkey very short term was on them only four and half months ..dealing with severe nerve and muscle symptoms head to toe …never took medication in my life prior to benzos or ever had any of these symptoms prior to benzos ..was given Klonopin for vaginal burning ..was peri menopause at the time ..Can you tell me were your symptoms physical or mental …I never got the mental aside from the anxiety ..was had subsided alot this past while ..Would love to be able to speak with you if possible ..please and thank you ..it’s hard finding someone that took this long and longer to actually recover ..thank you for reading
I’m definitely encouraged by this. Since the opioid crisis my doctor became worrisome and started sending benzo patients to psychiatrist’s. I was one of them sent because I have had many traumas and he was treating my depression and anxiety.
I was a forced withdrawal after 17 years. Also, had breast cancer-(feet & legs hard hit by taxol chemotherapy/pain…why ativan prescribed in 1st place…physician kept me on for 17 years; @ year 15 began suspecting that onset of agoraphobia was ativan tolerance), fibrymyalgia, endometriosis w/concomitant infertility, ulcer, widowed, 2 bouts of c. difficile colitis. All easier to tolerate. Well, widowed is equivalent, though of a different scale.
W/D sxs mimic many of the illnesses I’ve had. I now have mistrust issues w/doctors/medical community. Other than an ER visit in April for ankle swelling & pain (no DVT’s) have not seen a doctor or dentist since 2016. I’m now a recluse living in constant pain, which has been worsening since last dose…February 2019. I’ve been on benzobuddies since September 2018. Taper was begun May 2018…10 month dry cut solo taper. Dose @ start of taper 1-1/2 mg. 4 xs = 6 mg. daily.
I live in state of uncertainty whether or not cancer has returned & spreading, or it’s that fibromyalgia & taxol sxs were controlled by the ativan & w/o life is just going to continue as a state of suffering/torture & being physically absent from loved ones’ lives. W/out husband or dog, who also R.I.P. some years before (& previous @ end of cancer treatments – husband passed 4 years post cancer)…that was in 40’s. I feel like I lived what I did anticipate occurring, though not until 60s, in 40s.
I’ve also reached out to cancer organizations to see if there are any taxol-neuropathy online support groups, but have not received response. I am private individual & not very trusting of sharing online. I participate on benzobuddies, as far as research/education…sharing in that regard & games. Nothing about personal life & that’s how that will stay. I also feel that there is age-related social stigma. I don’t ever post that anywhere…this is first. I feel people over a certain age are just largely ignored/no longer viable. I cannot take NSAID’s due to the ulcer. Seeing as I haven’t seen a doctor in 3 years, I have no prescriptions. I just don’t know where to turn to anymore. I don’t know that I can anticipate ever a return to life. I know it will never be as it once was & that, despite many years of pain, was a happy one. This is not. Most of my years of pain were cyclical. During endo. it would be surgery, 6 months of hormone shut-off & then for the infertililty 6 mohths of hormone stimulation. No pregnancy/live births. 7 years. I’m a strong person; never had any issues w/anxiety…not throughout life; aced tests & job interviews. Could walk into any room, not knowing anyone & be at ease/comfortable & helping others to feel that way, too, in no time. Are there any online places for support w/this as it relates to pain? And/or this/cancer. I’ve read that ativan was frequently prescribed for chemotherapy pain management. Thank You.
I am looking for help with withdrawal from klonopin, which I have been on for 17 years, for insomnia, 1mg. Every night. It worked well for most of that time, till I learned what a nasty drug it is. I am 77 years young, not on any other meds.
I consider myself healthy, however I am having aches and pains, as well as weakened legs.
Tried to get off by myself, had an awful experience. Deep depression, fair. What to do.
Talked to a place in San Diego, I would be looking at a 6 mnt. Withdrawal time, and the expense of 19000,-, I am retired and simply cannot afford that expense. My husband and I married 54 years, have lived full time in our beautiful motorhome, travel the west coast, doing volunteer work in state park, which makes me flexible as far as where to go for treatment. Any suggestions, and thank you for the work you are doing,
Blessings Else.
Else, I have a friend who had been on Benzos for over 50 years. He wanted to come off the drug because he was experiencing major side effects. He had rejected the Veterans administrations protocol, the popular self-help websites, and could find no medical doctor who knew how to take him off the drug. Obviously he was not one of the “lucky” ones. He was symptomatic. Bottom line he found the right protocol for his own case and came off the drug in record time. He was 96 years old. This did not cause him pain and it did not take him years. This actually happened, it happened recently. Do you really think you are too old?
Else, I am 78 … I’ve been fighting the anxiety battle for about 7 yrs. First anxiety attacks ..ER room .. sent home .. then anxiety attacks that led to Afib .. then cardiologist involved. long story.. I did not tolerate the heart meds because I did not
have a heart problem. Finally He said it was anxiety induced attacks and to see my primary doctor. Primary doc prescribed Ativan ..well that stopped the anxiety attacks immediately. I was take .50 mg Ativan .. well I now know that is equal to 15 mg of valium. So.. as time goes on I need Ativan more often.. asked doc ..he said no worries it’s only .50 mg. Well it is a problem. I was going thru inter dose withdrawal….So I started cutting the pills… I thought I was going slow … WRONG. In 6 weeks I was off – for 3 days – and boom a rebound … at 5 a.m. I could barely call 911 … heart attack. I told them it was withdrawal. nobody believes you. Fortunately no damage. Anyway … I discovered Benzobuddies and the Ashton Manual.. and told my doc what we had to do and he was agreeable. With instructions from Benzo buddies ..can’t remember which guy but he does all the formulas ..he gave me the recipe to turn part of my pills into liquid. So I withdraw
.1 or more ml a day for 5 days and then hold till I’m am stable again and I cut again.
It is slow .. and I think at this rate it will be another yr before I am off. The ER dr was the only one who knew that .50 mg Ativan was = to 15 mg valium I crossed over to
valium and have been slowly withdrawing every since. it’s been a year .. I am finally down to 9 mg from 15mg It’s going a little faster now because I have learned how to handle the symptoms and the blood pressure spikes. I take L’Theanine between
doses if needed and I also take CBD -which works. I’m finally in single digits and want to be at zero. I know I have to go slow … my brain receptors are damaged and as I go slow they heal in the meantime. Soooo… that is my story. I go thru hell about one week after cutting for 5 days … then it settles down. I know I will get to zero. I am determined to get my life back. At my age I want to make the most of what I have left and I have lots I want to do. I am a watercolor artist and I have not been able to work in a long time. I just started working for an IT company from home ..so I feel good about that. We have to have purpose. Don’t give up.
This makes more sense, when you have been taking care of patients for 50 years and can look someone in the eye when discussing good and bad of most medications, you get your and your patients perspective. Anxiety and mental health is perhaps pandemic in this world. When I started people were put on barbiturates because benzo’s not available yet. Physicians can only prescribe what is available. Long term studies can alter thinking. I believe one of the many problems is that older physicians were thrilled to have something better than barbiturates. Younger physicians don’t know this history. Weaning someone off of benzo’s is a long and tedious process. Many of the physicians I encounter have trouble with this because it not only takes a huge amount of time, most insurance companies don’t recognize the need for small and reduced dosages. Maybe someday we can have a conversation
I am encouraged by this article. Perhaps the first of it’s kind.
This conversation is unfortunately long overdue….this benzo problem has been around for many many decades, when old and young doctors were practising.
I can’t count on my 10 fingers and toes how many times I have heard that there is nothing wrong with benzos but everything with me….or you..( I am not the only one who has been told this garbage)
If I had believed that nonsense, I would still be drugged up to the hilt and wondering why I felt so lousy with a life ruined.
Many have continued the prescribing, just because Mr White Coat said so…for life as I was told.
It’s high time the medical profession has some balls, some humbleness and accepts they made a mistake and listen to their patients when it comes to benzos, it’s willy nilly prescribing over long periods of time and learn how to take their patients off.
Not just break the pill in half for a few days and off you go…..it’s a 10 day deal at the most.
Right…..
How about 10 years of suffering with withdrawal, post withdrawal and unrelenting symptoms?
As Professor Ashton once told me, the last words about benzos haven’t been written yet.